Another day, another doctor....
Today, it was the nephrologist, also known as a kidney doctor. His name is Dr. Brian Ayuste and he is in a medical office building not too far from home. Terry and Steve liked him. They said he agreed with Dr. Cox about the kidney problems being a result of the chemotherapy and dehydration and that Steve's kidneys should heal. Steve was ordered to drink 6 bottles of water a day for three days to combat the residual effects of dehydration. He has lab work to be done on Friday and then two weeks later he has a follow up appointment. Lab work will include a urine test to check for protein, plus blood work to check sodium, creatinine, ck (creatine kinase) and uric acid levels. Uric acid is a by-product when cells break down and is expected to be elevated after chemotherapy.
Dr. Ayuste took Steve off two pills, Lesarten and Simvastatin. Steve took Lesarten for blood pressure because of the diabetes medication, Actos, and the Simvastatin is a cholesterol lowering drug. Those pills affect the kidney's filtering function somehow and can be safely stopped temporarily without any side effects. He wants the kidneys unencumbered by extra filtering until they get working normally.
They will follow up regularly and reassess what needs to be adjusted in the future because the maintenance chemotherapy may continue to stress Steve's system.
The good news, Steve may still return to work on Monday if he feels up to it. Terry said he felt better today and only needed one Prilosec instead of two to help with his upset stomach. He might make it back on schedule after all.
Wednesday, March 28, 2012
Tuesday, March 27, 2012
Currently Stable
The results from this morning's lab work showed that Steve was currently stable with no big change in his kidney numbers from yesterday. His kidneys have some damage from the chemotherapy, about 50% from normal, but apparently the doctors don't get worried until you get down to 15% of normal. As a precaution, however, Steve gets to see a kidney specialist tomorrow, a nephrologist somewhere near them so they don't have to drive downtown. Steve is a bit concerned about all of this because he has been looking forward to returning to work on Monday and he hopes this won't postpone it.
He has been taking the anti-nausea pills regularly because of a general stomach upset. He eats small meals or snacks throughout the day and has kept them down. He drank lots of bottled water and black tea yesterday and will try to keep drinking a lot like he is supposed to do.
Thursday, they recheck his blood work and will check his platelet levels again (they didn't check it this morning). More good things to look forward to :)
He has been taking the anti-nausea pills regularly because of a general stomach upset. He eats small meals or snacks throughout the day and has kept them down. He drank lots of bottled water and black tea yesterday and will try to keep drinking a lot like he is supposed to do.
Thursday, they recheck his blood work and will check his platelet levels again (they didn't check it this morning). More good things to look forward to :)
Monday, March 26, 2012
More Needles
Well, this morning Steve and Terry went to see Dr. Cox. Lucky Steve got to give some more blood and wait for the results for about 20 to 30 minutes. The results showed a slightly higher number for creatinine level (2.3) which indicates he is dehydrated still and his kidneys are having some trouble. His platelet count was essentially the same at 47,000.
What do doctors like to do for high creatinine/dehydration? Give IV's! Steve loves getting poked and having needles (NOT!) So, between about 8:30 and 2:00 this afternoon, Steve received two bags of IV fluids. He's probably running to the bathroom to empty his bladder right now. Tomorrow he gets to go back and have his blood taken again to see what changes happened. He's also supposed to drink more fluids tonight. Hopefully his levels will be good in the morning and he won't need any more IV's.
Blood platelets help clotting. Steve's level is quite low, but not as low as 20,000 needed for a transfusion. Terry talked to Dr. Hu today about the blood test results. Dr. Hu told them no green tea, garlic or red wine and no shaving with a regular razor blade. They had to get an electric razor this afternoon. There also will be no contact sports. And NO bungee jumping.
What do doctors like to do for high creatinine/dehydration? Give IV's! Steve loves getting poked and having needles (NOT!) So, between about 8:30 and 2:00 this afternoon, Steve received two bags of IV fluids. He's probably running to the bathroom to empty his bladder right now. Tomorrow he gets to go back and have his blood taken again to see what changes happened. He's also supposed to drink more fluids tonight. Hopefully his levels will be good in the morning and he won't need any more IV's.
Blood platelets help clotting. Steve's level is quite low, but not as low as 20,000 needed for a transfusion. Terry talked to Dr. Hu today about the blood test results. Dr. Hu told them no green tea, garlic or red wine and no shaving with a regular razor blade. They had to get an electric razor this afternoon. There also will be no contact sports. And NO bungee jumping.
Sunday, March 25, 2012
Still Having Nausea
Perhaps it was too much to expect the end of chemo and radiation to go smoothly.....
Steve had two pretty good days. Friday, the last day of radiation, Terry and he went out to lunch and Steve ate some pizza. He also had a light dinner. We saw him Saturday morning and he looked great. He ate a yogurt for breakfast and had some energy. Terry said he was tired later in the day but he ate some dinner. He hadn't taken any pills except his diabetes pills since Dr. Hu's permission to stop them.
Sunday went not so well. He threw up his juice before breakfast, then again after lunch. Then twice after his half a sandwich for dinner. He initially didn't want to take any anti-nausea medications, thinking he would feel better and it would pass, but Terry made him take the pills when it didn't stop.
They are scheduled to see Dr. Cox tomorrow morning. I hope he stays well enough to make it through tonight until then. I suppose it's only the residual from his cancer treatment and not anything else, like from the platelets being low or his creatinine levels being high. We'll find out tomorrow, I suppose.
Steve had two pretty good days. Friday, the last day of radiation, Terry and he went out to lunch and Steve ate some pizza. He also had a light dinner. We saw him Saturday morning and he looked great. He ate a yogurt for breakfast and had some energy. Terry said he was tired later in the day but he ate some dinner. He hadn't taken any pills except his diabetes pills since Dr. Hu's permission to stop them.
Sunday went not so well. He threw up his juice before breakfast, then again after lunch. Then twice after his half a sandwich for dinner. He initially didn't want to take any anti-nausea medications, thinking he would feel better and it would pass, but Terry made him take the pills when it didn't stop.
They are scheduled to see Dr. Cox tomorrow morning. I hope he stays well enough to make it through tonight until then. I suppose it's only the residual from his cancer treatment and not anything else, like from the platelets being low or his creatinine levels being high. We'll find out tomorrow, I suppose.
Saturday, March 24, 2012
Feeling Better
Now that the chemotherapy and radiation have ended, Steve is able to eat again. He is already eating small meals and his energy level is much improved. Yesterday, they went to Dr. Hu's and had a positive meeting. Steve was cleared to go back to work on April 2nd with the stipulation that he be allowed to rest when needed. Dr. Hu is monitoring his blood work as the platelet levels dropped from the chemotherapy. He took more blood work Friday and called this morning to let them know the platelet level dropped again to the 46,000 level and his creatinine levels were off. They need to see their primary doctor, Dr. Cox on Monday to check again and drink plenty of fluids in the meantime. Steve is able to drink now, since the nausea is gone. He couldn't in the last week since even a little fluid sent him off the the bathroom to throw up. We expect his blood work to return back to normal because he is off the chemo and because he can eat and drink normally again.
The schedule for the next round of care is a MRI April 20th. There is a 50/50 chance of getting a false positive reading for a tumor left over from the symptoms of the radiation, which causes swelling. After that, Steve will have two rounds of maintenance chemotherapy: two cycles of 5 days of pills followed by 23 days off for 2 months; then another MRI. Then they reassess how often those cycles are repeated based on the findings. The dose of the chemo will be higher for the 5 days than the dose he just finished. We will see how that effects him.
His last radiation was Friday morning. FREEDOM!! They gave him a certificate of completion and a pretty bunch of daffodils to celebrate. The last week's dose of radiation was called Boost, which focused only on the area of the tumor (not the 2 cm around it).
Plans for this next week will start to normalize with taxes to be done and Spring Break for their boys. Steve will do whatever he wants! He will eat and exercise (he was already on the treadmill this morning) and start to have fun. Good times again.
The schedule for the next round of care is a MRI April 20th. There is a 50/50 chance of getting a false positive reading for a tumor left over from the symptoms of the radiation, which causes swelling. After that, Steve will have two rounds of maintenance chemotherapy: two cycles of 5 days of pills followed by 23 days off for 2 months; then another MRI. Then they reassess how often those cycles are repeated based on the findings. The dose of the chemo will be higher for the 5 days than the dose he just finished. We will see how that effects him.
His last radiation was Friday morning. FREEDOM!! They gave him a certificate of completion and a pretty bunch of daffodils to celebrate. The last week's dose of radiation was called Boost, which focused only on the area of the tumor (not the 2 cm around it).
Plans for this next week will start to normalize with taxes to be done and Spring Break for their boys. Steve will do whatever he wants! He will eat and exercise (he was already on the treadmill this morning) and start to have fun. Good times again.
Thursday, March 22, 2012
Here Comes the Light at the End of the Tunnel
This week kept getting worse for Steve as the effects of his radiation and chemotherapy accumulated. By Wednesday, he threw up three times. His weight was 256, down 48 pounds from the start. He also had routine blood work done which showed his platelets on the low side. The normal low number is 100,000 and Steve's was 86,000. It's expected to drop due to the chemotherapy, but.... now the good news, are you ready for it?..... Dr. Hu said Steve could stop the chemotherapy yesterday!! Mostly because his lab values were low but also because he's feeling poorly. And it only cuts him short by a few pills.
Whoopee!! Intensive chemotherapy is now officially over! Now, there is still maintenance chemotherapy to complete but that's another story. Tomorrow, Steve and Terry go to Dr. Hu's office and expect to receive all the details about maintenance and the follow-up MRI's. Tomorrow morning is also Steve's last day of scheduled radiation therapy so by about eleven o'clock the whole kit and caboodle will be over.
Party Time! Haha! (except Steve is too tired to party yet. We'll take a raincheck on that party and celebrate quietly for now.)
Whoopee!! Intensive chemotherapy is now officially over! Now, there is still maintenance chemotherapy to complete but that's another story. Tomorrow, Steve and Terry go to Dr. Hu's office and expect to receive all the details about maintenance and the follow-up MRI's. Tomorrow morning is also Steve's last day of scheduled radiation therapy so by about eleven o'clock the whole kit and caboodle will be over.
Party Time! Haha! (except Steve is too tired to party yet. We'll take a raincheck on that party and celebrate quietly for now.)
Terry's March 20th E-Mail
Many of you received this in your inbox a few days ago. I wanted to post it for any of you out there who missed it. It shows another side of the effects of this serious illness, that is, how it impacts Steve's psyche. The "missing plug in" was a big happy face. I don't know how to make it show up here:
Hi everyone, my apologies for the delay.....To say the last two weeks have been a rough road would be putting it mildly... We were aware this last stretch would be the most difficult, but I guess at least the radiation will be over in 3 days ,and daily chemo in five. light at end of tunnel, right? Constant nausea, occasional vomiting, and overwhelming fatigue, are the physical side effects, but what this does to a man’s ego, is just as hard.
We go to the Dr. on Friday, and discuss a well earned month reprieve from treatment, then it slows significantly to 5 chemo pills every 28 days, and bimonthly MRI’s for a year. the 1st after the month off.
The boys have been busy with school and performing, I can’t help thinking of Mom (Shirley) sitting up in Heaven smiling with pride at Nathan’s solo in his March 8th concert, or Dad & Daddy bursting out in laughter as Adam dances across the stage dressed in a Tootsie Roll costume... :-D We miss them all!!!!
Steven hopes to return to work in early April, which will help him feel better....He loves what he does, and Lockheed has been amazing wonderful through all of this, his Co-workers,and bosses, have supported Steven & I immensely through this whole adventure.
We are very blessed to have our family, and friends in our lives as well. You all have helped me keep my sanity in check....
We can’t ever thank you enough!!!!!!!!!!!!!!!!!!!!!!!!!!
All my Love, and God Bless
Terry
Saturday, March 17, 2012
From Crummy to Crummier
I talked to Steve this morning. Terry had called to let me know that Steve's been doing worse since we last spoke three days ago. Steve didn't sound too bad, he still had some energy in his voice, but it was only about ten o'clock which is his best time of day. He said his attention span has decreased with his fatigue. He told me a sad story... he received a video game for Christmas he wanted, Mass Affect 3, and he can't play it for more than a half an hour before he's too tired to continue. He says it's surreal that he's not wanting to play it a lot, that it's not at all like him. And he doesn't watch movies much because he gets too tired to finish watching them. And food commercials only make him feel nauseated where he used to desire the pretty food. Isn't that pitiful?
He continues to lose a pound a day. He ate a yogurt this morning and then threw it up. He ate an english muffin last night for dinner. He snacks on handfuls of nuts. He's a nutty kind of guy :) He's now eating high calorie foods like full fat milk and yogurt, just not very much of it. He says when he drinks a glass of milk, the glass size would fit in a little bathroom Dixie cup, just a few ounces at a time. His weight is now in the 250's. He hasn't weighed so little since he was in his twenties. Some years ago, when he went on Weight Watchers his goal weight was 263. He said he blew past that weight in no time.
Terry called Dr. Hu on Thursday since the nausea and excess saliva were so bad. Dr. Hu added a Trans-derm Scope patch, like for sea sickness, which goes behind Steve's ear. It's supposed to last three days but it has to be removed for the radiation treatments. Terry saved the plastic it came on and then had Steve put it back on after Friday's radiation. He took it the first night along with his antihistamine pill and it helped but only so-so since then. Unfortunately, it didn't help enough this morning since he couldn't keep down his breakfast.
Since Steve is eating so little his blood sugar levels are good. He is only taking three Actos pills a day, compared to his prior level of Actos plus four Glipizides a day. With the pills, his morning blood sugar levels range between 120 - 150. That's one small good thing.
Adam has three performances of his Willy Wonka school play where he is wearing a Tootsie Roll costume. Terry is only going to the one matinee so she can stay home with Steve longer. Adam is learning to grow up and be independent for his other performances. Another little good thing, I suppose... Sigh....
He continues to lose a pound a day. He ate a yogurt this morning and then threw it up. He ate an english muffin last night for dinner. He snacks on handfuls of nuts. He's a nutty kind of guy :) He's now eating high calorie foods like full fat milk and yogurt, just not very much of it. He says when he drinks a glass of milk, the glass size would fit in a little bathroom Dixie cup, just a few ounces at a time. His weight is now in the 250's. He hasn't weighed so little since he was in his twenties. Some years ago, when he went on Weight Watchers his goal weight was 263. He said he blew past that weight in no time.
Terry called Dr. Hu on Thursday since the nausea and excess saliva were so bad. Dr. Hu added a Trans-derm Scope patch, like for sea sickness, which goes behind Steve's ear. It's supposed to last three days but it has to be removed for the radiation treatments. Terry saved the plastic it came on and then had Steve put it back on after Friday's radiation. He took it the first night along with his antihistamine pill and it helped but only so-so since then. Unfortunately, it didn't help enough this morning since he couldn't keep down his breakfast.
Since Steve is eating so little his blood sugar levels are good. He is only taking three Actos pills a day, compared to his prior level of Actos plus four Glipizides a day. With the pills, his morning blood sugar levels range between 120 - 150. That's one small good thing.
Adam has three performances of his Willy Wonka school play where he is wearing a Tootsie Roll costume. Terry is only going to the one matinee so she can stay home with Steve longer. Adam is learning to grow up and be independent for his other performances. Another little good thing, I suppose... Sigh....
Wednesday, March 14, 2012
Exhausted All the Time
The effects of radiation and chemotherapy are accumulating with a huge increase in fatigue and some increase in nausea. Steve is too tired to do much now. He naps often during the day and goes to bed early at night. He finds it an effort to sit at his desk to use the computer and stopped driving the boys to school in the morning this week. He was too tired to attend Nathan's choir concert last week. Adam's play is this weekend and Terry has a ticket for Steve but he doesn't feel well enough to go, even to the four o'clock matinee. He did walk ten minutes on the treadmill today, but that was all, aside from going to radiation, that is.
Steve's weight continues to drop. He lost seven pounds last week, down forty-four pounds from the start. His nausea continues, even with Prilosec, Zofran and Compazine he has had dry heaves every other day lately. Obviously he's not eating much and constipation is a problem. Terry says he has skinny little stick legs but still has his belly.
Too tired to eat. How does that happen?
Seven days left of radiation, only a week and a half. The chemo will end shortly thereafter based on what Dr. Hu says that last day, March 23rd. They are counting the days.
Steve's weight continues to drop. He lost seven pounds last week, down forty-four pounds from the start. His nausea continues, even with Prilosec, Zofran and Compazine he has had dry heaves every other day lately. Obviously he's not eating much and constipation is a problem. Terry says he has skinny little stick legs but still has his belly.
Too tired to eat. How does that happen?
Seven days left of radiation, only a week and a half. The chemo will end shortly thereafter based on what Dr. Hu says that last day, March 23rd. They are counting the days.
Sunday, March 4, 2012
Working Drugs
Just a quick update.....
Steve's new drugs of prescription strength Prilosec and Compazine are helping with the nausea and upset stomach. Terry called tonight to let me know Steve is feeling better since he got his new medications from Dr. Hu late Friday. He ate a full meal of salad with chicken and rolls for dinner AND he walked ten minutes on the treadmill for the first time in a while.
Also his hair starting falling out more. Yikes! He hasn't had it cut for a while so it's longer than usual. I think he should keep it long so he can do a comb-over like bald guys do, hehe, except Terry says he's getting it cut tomorrow.
And Nathan was selected to sing a solo in his school concert this Thursday. Yea, Nathan!
Steve's new drugs of prescription strength Prilosec and Compazine are helping with the nausea and upset stomach. Terry called tonight to let me know Steve is feeling better since he got his new medications from Dr. Hu late Friday. He ate a full meal of salad with chicken and rolls for dinner AND he walked ten minutes on the treadmill for the first time in a while.
Also his hair starting falling out more. Yikes! He hasn't had it cut for a while so it's longer than usual. I think he should keep it long so he can do a comb-over like bald guys do, hehe, except Terry says he's getting it cut tomorrow.
And Nathan was selected to sing a solo in his school concert this Thursday. Yea, Nathan!
Saturday, March 3, 2012
Oomphless
Steve and Terry saw Dr. Hu yesterday as scheduled. Terry called me this morning with how the last week went and with a medication update:
Steve's nausea and fatigue have progressively worsened. He has very little energy and has stopped all unnecessary activity. He is constantly nauseated but mostly keeps his food down. Eating small, frequent meals is best. Crackers and low-sugar apple juice have become his best friend. He lost two pounds this week. He still has excess saliva and acid reflex which contribute to the nausea and he has antihistamine to take when he needs to dry him up, but Steve has gotten tired of taking pills and doesn't take this one as often as his symptoms might warrant. Dr. Hu added prescription strength Prilosec (40mg) to help settle his stomach (in addition to the Maalox). He also added 10mg Compazine, three times a day to be taken with the Zofran to help control the nausea. Steve had lab tests done on his blood and all was as expected.
Steve continues with Monday thru Friday radiation in the mornings. I asked about how big an area the radiation covers. It is aimed at the location of the original tumor plus two centimeters around it. Steve now has a special, metal-free lotion, Radiaguard, to apply to his scalp because of skin redness. Terry rubs it in after the radiation treatment and before bed. She says his skin has been getting flakey and this helps. She's careful around the scar from the surgery. It's now scabbing and starting to fall off, and his hair is starting to thin. Not big amounts, but she notices it, especially around the areas where the radiation machine aims.
I wonder if Steve will end up bald. Wouldn't that be a funny sight?
They are now half way through the chemo/radiation schedule. The last day is March 23rd, unless they tack on the two pills Steve missed earlier to the end.
Steve's job has been taking the boys to school in the mornings. He enjoys doing it and he mostly has enough energy in the morning. Then they go to radiation and Steve gets tired after that. He has not exercised for a while now. He lies around, resting, watching TV, reading his Kindle or the computer and checking e-mail. Their younger son has a school concert next week Steve is hoping to attend. Adam is a tootsie roll in a Willy Wonka style play. How cute is that? Their older son has a concert at Disneyland two weeks afterwards, but they're not planning on seeing that one because it would be too exhausting for Steve. Isn't that sad?
For those of you who know Terry, she received accolades from the boys elementary school for her years of service as a volunteer. She was honored at an award ceremony Tuesday as Volunteer of the Year. I know it was well deserved. She also had a brief scare after a mammogram this week and had to have an ultrasound to confirm she did not have breast cancer. Fortunately, her doctors expedited the process so she didn't have to worry too long before she received her negative results. She has been a trooper helping Steve and supporting her whole family. I'm glad that scare didn't trouble her for any longer.
Steve's nausea and fatigue have progressively worsened. He has very little energy and has stopped all unnecessary activity. He is constantly nauseated but mostly keeps his food down. Eating small, frequent meals is best. Crackers and low-sugar apple juice have become his best friend. He lost two pounds this week. He still has excess saliva and acid reflex which contribute to the nausea and he has antihistamine to take when he needs to dry him up, but Steve has gotten tired of taking pills and doesn't take this one as often as his symptoms might warrant. Dr. Hu added prescription strength Prilosec (40mg) to help settle his stomach (in addition to the Maalox). He also added 10mg Compazine, three times a day to be taken with the Zofran to help control the nausea. Steve had lab tests done on his blood and all was as expected.
Steve continues with Monday thru Friday radiation in the mornings. I asked about how big an area the radiation covers. It is aimed at the location of the original tumor plus two centimeters around it. Steve now has a special, metal-free lotion, Radiaguard, to apply to his scalp because of skin redness. Terry rubs it in after the radiation treatment and before bed. She says his skin has been getting flakey and this helps. She's careful around the scar from the surgery. It's now scabbing and starting to fall off, and his hair is starting to thin. Not big amounts, but she notices it, especially around the areas where the radiation machine aims.
I wonder if Steve will end up bald. Wouldn't that be a funny sight?
They are now half way through the chemo/radiation schedule. The last day is March 23rd, unless they tack on the two pills Steve missed earlier to the end.
Steve's job has been taking the boys to school in the mornings. He enjoys doing it and he mostly has enough energy in the morning. Then they go to radiation and Steve gets tired after that. He has not exercised for a while now. He lies around, resting, watching TV, reading his Kindle or the computer and checking e-mail. Their younger son has a school concert next week Steve is hoping to attend. Adam is a tootsie roll in a Willy Wonka style play. How cute is that? Their older son has a concert at Disneyland two weeks afterwards, but they're not planning on seeing that one because it would be too exhausting for Steve. Isn't that sad?
For those of you who know Terry, she received accolades from the boys elementary school for her years of service as a volunteer. She was honored at an award ceremony Tuesday as Volunteer of the Year. I know it was well deserved. She also had a brief scare after a mammogram this week and had to have an ultrasound to confirm she did not have breast cancer. Fortunately, her doctors expedited the process so she didn't have to worry too long before she received her negative results. She has been a trooper helping Steve and supporting her whole family. I'm glad that scare didn't trouble her for any longer.
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